Ben Brewer's Blog

Ben started round two of 3F8 on Monday, August 9th. He is doing somewhat better this time, requiring what seems like less ‘help’ during and after the infusuion. Today was the first time I got to experience the administration of the wonder treatment and I am very proud of how Ben handled it. A friend likened it to a gall bladder attack x 100. Personally, I’ve never experienced a gall bladder attack, but I can imagine that it pales in comparison to what Ben and the other kids go through during this treatment.

Fortunately Ben only required heat packs and massage to his midsection today. It was slightly surreal to her him yell out “Give it all you’ve got!” or “More, give me more!” as I rubbed his stomach with heat packs, bearing down as hard as I could to quell the pain. He sounded more like a football coach than a 9 year old kid…

On the way in we met another family going through the same thing. It was disheartening to hear the mom say that her son wasn’t getting dilaudid with his 3f8 anymore because he had a reaction and crashed earlier in the week. I couldn’t even imagine having to put Ben through that, given the pain he had today, which was relatively minor in comparison to other days.

Ben is resting comfortably right now back at the Ronald McDonald house. Only God knows what tonight will bring, hopefully a little respite from the pain.

He deserves at much.

Madeline, Yoshi and Dad will be leaving in just a bit to pick up Ben and Mom from the airport. After what can only be described as an excruciating experience, they will be home for a couple of weeks before going back for the next round of antibodies.

I can’t even begin to imagine the pain Ben went through. I’m thankful he made it through this first round without any I’ll effects (that we know of) and will be back here.

Tomorrow we go to Papa Gil’s house up in Frisco for some much needed relaxation time. Gil has some prime fishing spots picked out for the kids and we are taking our canoe out for it’s first trip of the year.

Thanks for all the love and support. Ben will need it to get through the next few rounds.

Matt

Just a quick update to let you all know what’s up with Ben. Fortunately, on the medical front their isn’t much going on. He had clinic today and his counts are still pretty good. He is still on the TPN, at least until he leaves for New York tomorrow. Hopefully he’ll be off of it for good as he is gaining weight again.

As for New York, Sarah and Ben will be making the trip this time. They will be leaving Wednesday morning and returning Saturday night. While this doesn’t give them much free time, their schedule will be jam-packed for the two days they are their. Ben has multiple scans as well as the dreaded double bone marrow aspirate on Friday.

We’ll update with another post once we get more information. Also, look for some new videos soon. Ben has been trying his hand at stop motion animation and just about has his first one done!

Matt

Late UpdateThe docs are fairly confident we’ll get out tomorrow after all. Ben so far has pooped and had a few drinks of water, apple juice and sprite. Our wonderul Nurse Practioner, Nancy, thinks that Ben has a small ulcer in his esophagus which causes ‘referral’ pain in his back. Funny how the body works like that. The last milestone is to have an ANC around 100. His ANC was 69 this morning and should be close to 100 by the morning.

Has it really been a week since Ben was admitted? If it has, the time has certainly not flown by. Ben is doing much better today than yesterday. The mucositis has just about cleared up and he is actually able to swallow now. Unfortunately, with all the puking he did, he seems to have pulled a muscle or tweaked something in his right side. Now, instead of screaming in pain from the mucositis, it’s the pain from his side when he swallows.

He just got back from having an x-ray done to see what is going on. They also took pictures of his intestinal area to see if he is blocked up since he hasn’t gone since we got here.

The healing process has been painful and he might be able to get out tomorrow. Of course, this all depends on whether or not his counts go up, the pain clears up and a whole host of other markers he has pass before getting that final approval to walk out the door. (not that he couldn’t just leave if he wanted to, but he doesn’t know that yet and we wouldn’t let him.)

Our next steps, as some of you know, are a trip to New York for scans on the 13th and 14th. We hope to go as a family and do a show and maybe walk around a little. If anyone has favorites, let us know… Ben seems to like Broadway shows so we’ll have to hit one up. Maybe two. That and some cheesecake, which he really likes.

Also, regarding the site changes. These may or may not be permanent, we’ll let you know.

Matt

Well, not much changed between yesterday and today. Ben is less sick and actually managed to stay awake a good portion of the day. I take that to mean he is finally on the mend. His right side is the major pain spot right now as he is still hurting from pull muscles. Ohe screams in agony when a pill has to go down.

He did make it out of the room for a bit earlier, but was a bit unstable due to all the drugs in his system. Tomorrow should be much better. Most likely he will be released Tuesday because the fever comes and goes, not to mention he hasn’t eaten since he got here. Thankfully he is on liquid nutrition (lipids and TPN).

The flip side of not eating is that he also hasn’t pooped. We are trying to get him to down some miralax, but he’s none too happy with it. It beats the nasty, foul, brownish alternative, though.

I’ll update again tomorrow.

Matt (Ben’s Dad if you didn’t guess already)

Things today have been relatively uneventful. Ben has stayed in bed all day, still to tired and sick to make it up. He just had another 10 minute puke-fest, once again with vomit and bile. This time, however, there was little to no blood. This portends good things, I hope. He has asked at least twice when he’ll be able to go home. I told him it all depends on when he’s better. That and when he has a $50 to slip to the charge nurse.

One other thing: his hair has started to fall out again. I leaned down to give him a kiss on the head and noticed his pillow was fuzzy. We are going to wash his head in bit in hopes of getting as many hairs out as possible before he falls asleep again. This is because we don’t want hair in his mouth… He did his before and it was not pleasant.

Have a great evening.

Matt

Wow, a whole 8 hours of sleep last night. What that means is Ben woke up three times last night: once to pee (they need to make those urinals glow in the dark), once because he needed a heating pad (he’s pulled back muscles again from the constant puking) and the last time for pain relief for the sore on his tongue.

He told the nurse that he dreamt he would be getting out of here today… She was very diplomatic about this, offering that she hoped he would and that she wouldn’t want him to be here when she got back tonight. I’m still thinking Tuesday at the earliest. His counts haven’t completed bottomed out yet and with the stem cell rescue I’m honestly not sure what to expect.

I can only marvel at my son. His strength through this whole ordeal has been amazing. His fight, and the many other children who are fighting for their lives, is something that really puts our own lives into perspective. No matter what trivial things pop up in our lives, like overdue bills or mean people on the bus, we don’t have it half as bad as these kids. Of course, as a parent with a sick child, if you are one of those mean people on the bus I have every right to rip your cold heart out and wield it in your face as you stare in confusion… Don’t piss us off, every day is a worse day for my kid than you can even imagine.

Have a pleasant day today and be nice…

Matt

Ben is up and watching Disney XD right now! While his counts are still a bit low he is doing much better than expected. He is still puking a lot and has a million drugs going through him. Hopefully, if his counts rise and the stars align properly, he will get out early next week.

Well, no big surprise to us, but Ben is back in the hospital. That last round of chemo, which consisted of a lot of cytoxin, has knocked the crap out of his already weak body. His stem cell rescue went fine on Monday but we were back in clinic Tuesday because of the mucositis.

Ben has slept pretty much the whole time, waking only sporadically to suction his mouth or empty his bladder. We expect that he has not hit rock bottom just yet and will get much worse before the week let’s out.

Madeline, of course, is a ray of sunshine in the dark times. Someday she’ll get an award for being such a great daughter and sister. For now she’ll have to settle for a Friday night “date” with dad.

Mom and dad are barely hanging onto their sanity. We need a vacation… Perhaps a few days up in the mountains to just decompress. One of the nice things about living here in Colorado is that hitting the mountains is a matter of a couple of hours drive West. Doing so from Ohio was the complete opposite (not to mention there are no mountains there).

Hopefully we’ll get into a normal rythm once Ben starts antibody treatment. Then we can make plans for a family vacation.

Keep the prayers coming as we can all use them right now.

The Brewers

Ben was admitted to Denver Children’s Hospital on Wednesday of this week. He so far has received three rounds of Topetecan, two rounds of Cytoxin and one round of Vincristine (No, not the car, that was Christine.) He has been puking a lot, so they have been alternating Zophran and Benadryl to keep the puking to a minimum.

Due to yet another error in communicating with us (go figure) we were told Ben would be released on Monday. We were pleasantly surprised, and somewhat agitated, on Friday to find out that he would actually be released on Saturday afternoon. He will be back in clinic on Monday to undergo the stem cell rescue then back home.

So, all in all, this round, even though extremely high dose, has been relatively uneventful. That will change, of course, once his counts drop and put him back in the hospital. Most likely this will occur sometime next week, right when we’re all ready to hit the sack.

Ahh, the joys of pediatric cancer…

Ben eating breakfast

Right now Ben is eating a rather large breakfast of scrambled eggs and half of a belgian waffle (smothered in butter and syrup). Glancing over at him just now, he is unwrapping a small piece of chocolate that one of the volunteers gave him. Hopefully, this will all stay down long enough as his appetite sucks and he’s beginning to look like a concentration camp survivor again.

We’ll update more as the week progresses. Please continue to pray for Ben and the rest of the family. That light at the end of the tunnel is getting closer…

The Brewers